Worth the Sweet Moment

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Told by: Sarah

Today, she has been missing for 9 months and 4 days. I know this because I have a little ticker as my email signature that tells me this.  I also know that it’s actually been 9 months, 4 days, 6 hours and 57 minutes since she’s been gone… but who’s keeping count?  My daughter, Beatrix Elizabeth, entered the world quietly on December 13, 2010. She left it just as quietly one hour and forty-seven minutes after. I carried her for Thirty-four weeks. Thirty-four weeks of living. Thirty-four weeks of trying to fit an infinate amount of love into a finite amount of time. We knew by the 9th week of our pregnancy that something was seriously wrong. At an ultrasound, she was diagnosed with hydropsy fetalis. By 12 weeks, Beatrix had a thickened nuchal fold translucency. 16 weeks, a giant omphalocele and a cystic hygroma. When seen together, these to defects usually indicate a genetic disorder incompatible with life. We had the requisite testing done- and no genetic disorders were found. We had made the choice to carry to term before the genetic testing- we were hoping for some answer, or some explanation which could be fixable. We thought that once genetic testing came back as normal, we were out of the woods. We found stories of miracles- babies that had beaten the odds. We wanted to be one of those stories. Going along through our pregnancy, we were told at each appointment that we were most likely going to miscarry before the next appointment. We always showed up, Bea’s heart beating strong, to the next appointment, with a mixture of joy and sadness. We loved being able to watch her moving on the ultrasound screen. Knowing that this could possibly (and would most likely) be the only opportunity that we would have to see her living, we got to know our infant girl this way. Through the grainy images on the screen, we would see that she liked keeping her hands in front of her face- they always had a difficult time getting photos of her face because of this. We know that she made the same face as my older son does when he is woken up unexpectedly.  We went through the pregnancy, collecting prayers and emails. We didn’t know what to expect when she came- because Beatrix was genetically perfect and her disorder was not diagnosed until I was 26 weeks along in my pregnancy. We knew that she would most likely live only a short time, but why?  At 26 weeks, we were sent for a fetal MRI, and she was diagnosed as having Limb Body Wall Complex, an extremely rare, polymalformative birth defect complex. There is no known cause for this. It is generally lethal, with only 4 documented survivors in the entire world.  We prepared, as best we could. We explained to our other children what was going to happen; we tried to explain to ourselves what was going to happen. None of the explaining worked. For us, or the children. We tried to have hope- maybe we would be the fifth family that was able to bring their baby home, with this terrible disorder. We knew that was unlikely, but hope is accepting the possibility of the unexpected. On the evening of Dec. 12, 2010, I began experiencing lower back pain. Within an hour of the onset of the pain, my water broke, and we rushed to the hospital.  Because one of the characteristics of Limb Body Wall Complex is a short umbilical cord, Bea had to be delivered via classical incision C-section. She came into this world quiet. After being assessed by doctors (we had asked for aggressive intervention at birth, just in case the doctors had made mistakes), it was concluded that she was unable to breathe due to insufficient lung function.  She was removed from ventilation, made comfortable, and brought to me. She was so beautiful, my daughter. I fell in love immediately. All of her was perfect- even the parts that doctors thought weren’t so perfect. She lived from 2:03 AM-3:50 AM. It was both not enough time, and all the time in the world. As frightened as I thought I would be, I would do it all over again, knowing what it is like from the other side. It was worth the sorrow to have been able to hold her just for that short sweet moment in time.

 

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Comments

  1. Huggg

  2. If anyone is looking for information about Limb Body Wall Complex, and finds this, we have a website for pregnancy support at: http://www.limbbodywallcomplex.net

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